August 2016, Volume 1, Issue 8
Mind, Body, Spirit:
Linking Lives for Health and Wholeness
The Faith Community Nurse Health Ministry Newsletter
CONVERSATIONS TO PREPARE FOR END-OF-LIFE
Developing Advanced Directives with Adults
As faith community nurses we journey with congregants through their various health challenges including the process of dying. In our roles of educator and advocate we can utilize a document such as the 5 Wishes to enable people to identify their health care agent and provide clear direction to their health care providers, family members, and friends. Five Wishes is the first living will that talks about personal, emotional, and spiritual needs as well as medical wishes.
5 Wishes meets the legal requirements for an advance directive for anyone 18 or older in 42 U.S. states and the District of Columbia. In the other 8 states it can be attached to the state’s required form as a helpful guide. It is available both on-line and in print, and in 28 languages and Braille.
Once completed and signed the FCN and or pastor may offer to keep a copy in a confidential file and encourage the individual to distribute copies to their identified Health Care Agent, as well as to his or her health care providers and family members.
Many families gather together over the holidays. This provides the opportunity for a person to explain their desires to loved ones and give them written copies as desired. The need for preparation for these conversations makes November an opportune time to offer a 5 Wishes educational program within the congregation.
Next Steps, another document available from Aging with Dignity, provides specific information including the exact words and phrases to use to start these conversations. It also offers hints as to how to get past the conversation stoppers such as, “you’re healthy, we don’t need to talk about that now” that often occur.
Additional resources to assist in developing advanced directives with adults
When it’s my time to die explores how conflicted our society is about discussing death. The author offers the suggestion that showing the film, “Consider the Conversation: A Documentary on a Taboo Subject” stimulates discussion by showing stories of courage in older adults and incurably ill persons who utilize the gift of time to plan for their eventual death. Archived online the original article occurred in American Nurse Today Jan. 2012, 7(1).
Developing Advanced Directives with Youth or Children
As difficult as it is to talk about end-of-life wishes with the elderly it is even harder to open the discussion with a family in which a pediatric patient may be dying from an acute or chronic illness. Age appropriate resources are available that will assist families who have children or adolescents living with life-limiting illnesses. Using developmentally appropriate language, medical terms, and themes the booklets help the minor to express their preferences for how they wish to be cared for and remembered. Voicing My Choices is for adolescents and My Wishes for is for children.
An additional resource to assist in developing advanced directives youth or children
Tending to all their needs: Advance care planning for pediatric patients explains the challenges and the benefits of having a document so that health care providers can respect the child’s and family’s dignity and facilitate the end of life experience that was desired. Archived online the original article occurred in American Nurse Today Oct. 2010, 5 (10).
A PROGRAM OF END-OF-LIFE ADVANCED PLANNING FOR ADULTS
A church secretary, who also was very active in theater work, looked at the six part series that was being planned and labeled the series, Exit Strategies. The title and the series were well received by the congregation. Together the congregation explored the many arrangements that, when made ahead of time, assist the survivors as they transition to life without their loved one.
In addition to 5 Wishes the following five additional programs were offered:
- Financial planning – Have a financial planner explain how you can best plan for your resources to grow and then benefit others after your death. It’s not just the wealthy that can benefit from this advice.
- Writing a will – Everyone needs a will, even if they have modest resources. If there isn’t a will the state will manage the estate according to a set of standards that don’t take the individual’s priorities into consideration. Have a legal expert explain how a person may ensure that the house, possessions, life insurance benefits, and retirement accounts are distributed the way he or she desires. The cost of will preparation can be minimal.
- Learn the options available from a funeral home – Have someone speak who is familiar with what is required by law and what is actually optional. Questions related to embalming, burial, and cremation. When a person makes their own plans, some even prepay, the bereaved are protected from overspending when forces to make choices immediately after the death of a loved one.
- Planning your funeral or memorial service – Have the pastor explain options and provide a document on which a person can describe the type of service they would like, who they would like to speak, and their favorite readings, hymns, etc. This document may then be kept in the pastor’s file.
- Organ donation – 1 donor can save the lives of up to 8 people. An expert in the field can address some commonly heard concerns (1) there are absolutely no fees to be an organ donor; the family is not responsible for any charges, (2) the funeral won't be delayed or altered due to becoming a donor; open-casket funerals are still possible, (3) major U.S. religions support organ and tissue donation, and (4) donors receive the same level of end-of-life medical care as non-donors. Every effort is made to save the person’s life before any thoughts of donation are even considered. Donor information is available for each state at organdonor.gov. Another type of donation that may be considered at this time is the donation of the whole body to a medical school for training and/or research.
The unexpected benefits of this series can be:
- Conversations become more open about the reality that our lifetime is limited.
- Family members are relieved that the wishes of loved ones were expressed and written down.
- The staff of the faith community will find that it becomes much easier to minister to families when they are experiencing the dying and death of a loved one.
Rosalyn Carter, in her book Helping Yourself Help Others (1994, pg 3) states that there are four kinds of people on the world: (1) those who have been caregivers, (2) those who will be care givers, (3) those who are currently caregivers, and (4) those who will need caregivers. We, in our roles as FCNs easily fall into the 3rd category - those who are currently caregivers. Often in addition to our work we are also caregivers within our family, caregivers to our friends as they seek advice, and caregivers to those strangers we encounter in life. Nursing isn’t just what we do it’s who we are – individuals looking out and assisting others.
However, in our role we are exposed to those experiencing pain, trauma, and suffering on a regular basis. This also places us in the 4th category- those who will need caregivers. To remain fully capable of giving care we must take the time and space to regenerate our compassion energy on a regular basis. This will help prevent compassion fatigue.
A fellow caregiver, ministry partner, spiritual advisor, or honest friend is often needed to strongly and repeatedly remind us that we need to care for ourselves as earnestly as we care for others. A time of sabbatical from caregiving allows us to maintain our connectedness with our self and our God. Seek out a caregiver for yourself that will promote and assist you in a process of “stepping away”, mentally, physically, or emotionally, be it for a short period of time or days.
Countering Compassion Fatigue by Deborah A. Boyle in the Online Journal of Issues in Nursing at the Nursing World website explains compassion fatigue and how we can reduce our risk of developing it.
RESOURCES: PROFESSIONAL EDUCATION & NETWORKING
Research related to access to mental health
- Race, Ethnicity Affect Kids’ Access to Mental Health Care An analysis in the International Journal of Health Services finds disparities between white young people and their black and Hispanic counterparts in how they receive mental health treatment. Racial minorities received markedly less care – regardless of socioeconomic or health status.
Widening the Welcome – An example of a modified worship experience for adults and children with special needs and their families
- Christ Congregational Church, UCC, in Brockton holds an inclusive worship service for people with special needs and their families. The worship service is full of joy, providing a place for children from the congregation, and children and adults from the community. The singing, the participation, the core message that everyone is valued and loved fill the room. The pastor said: "You know it is worth it when we call people forward to receive communion saying 'all are welcome at this table' and people come with tears in their eyes."
- Sept. 15th 11:00-12:00pm PT Topic – Pastoral Care Issues: Addressing the End-of-Life Needs of Survivors of Sexual Assault / Domestic Violence As survivors of domestic violence and/or sexual abuse reach the end of their lives, many are longing to find peace, integration, and validation of their life experiences. Their stories of survival and coping may have left them struggling for many years with faith issues, such as forgiveness, suffering, and shame. The presenter will focus on how to help survivors find understanding of their place with God and peace at the end of their lives.
- Sept. 27th 2:00pm CDT Topic: Five Dimensions of Health This interactive webinar will discuss the 5 dimensions of health highlighting how church leaders can nurture these aspects of health in their community.
- Oct. 12th 2:00pm EST Topic – Managing the Risk of Child-to-Child Abuse in Your Ministries Experts will address what you can do to reduce the risk of child-to-child abuse in your ministries.
- Oct. 25th 2:00pm CDT Topic: Nurturing Active Families This interactive webinar will explore how families can grow together through play, movement and healthy nutrition. Fun and creativity are crucial factors.
- Sept. 12th - 14th Health Ministries Association Annual Meeting & Conference – Journey to Wholeness- Faith Leaders Meeting Community Health Challenges, Crown Plaza, Chandler (Tucson), AZ. During the last session of the conference the revisions contained in the 3rd edition of the Faith Community Nursing – Scope and Standards of Practice (ANA & HMA, 2016) will be shared.
- Sept. 28th Celebrating Hope: Promoting Mental Wellness and Resiliency For lay leaders, families and persons with lived experience with mental health challenges, and mental health providers. Addison, IL. Co-sponsored by the Interfaith Mental Health Coalition & Pathways to Promise
- Nov. 15th – 18th Healthy Churches 2020 Conference at the Sheraton Charlotte Hotel, Charlotte, N.C. presented by The Balm in Giliad, Inc.
RESOURCES: FOR OUR PRACTICE
Resources to Support Family Caregivers:
- Prepare to Care – A Planning Guide for Families was developed by AARP to help make the job more manageable. It includes information on how to have vital conversations with older family members, organize important documents, assess your loved one's needs and locate important resources. It provides simple, straightforward information and checklists that help guide family conversations. And it outlines what you need to do — in five simple, easy-to-understand steps — to take care of your loved one in the best possible way.”
- Caring for the Caregiver is a document that provides a brief description of what the family caregiver experiences and then provides ideas for the caregiver, ideas for church members, and ideas for the congregation.
- Caring for Yourself When You’re Caring for Someone Ill (English and Spanish), Becoming a More Confident Caregiver, Family Caregiving: When It Wears You Down, Self-care for Caregivers pamphlets for our congregants are available from Abbey Press.
SHARING THE FCN EXPERTISE
The lead story In the July/August 2016 issue of The American Nurse, Learning what it means to provide spiritual care, explains how important it is for nurses in all settings and roles to be able to have discussions with patients and families about spiritual needs. Yet many nurses admit to feeling unprepared. In a study of 30 critical care nurses published in the May 2016 issue of the American Journal of Critical Care the authors report that the nurses did not share an understanding of a common definition, the majority referenced religion as a way to express spirituality, and yet 75 % expressed having some level of comfort in providing spiritual care to critically ill patients typically around issues such as end of life and feelings of guilt or hope. The information that that Alyson Breisch, MS, BC-RN Faith Community Nurse, contributed to the article will increase the understanding of all readers and bring additional recognition that we are the nursing experts in the intentional care of the spirit. Thank you, Aly for representing our specialty so effectively!
SEEKING INPUT FOR FUTURE ISSUES!
What topics would enhance your practice?
What information would you like to share?
Please send along your ideas and/or information to Peggy Matteson, editor of the newsletter.